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dc.contributor.authorBurgers, V. W. G.
dc.contributor.authorvan der Graaf, W. T. A.
dc.contributor.authorvan der Meer, D. J.
dc.contributor.authorMcCabe, Martin G
dc.contributor.authorRijneveld, A. W.
dc.contributor.authorvan den Bent, M. J.
dc.contributor.authorHusson, O.
dc.date.accessioned2021-04-06T15:07:10Z
dc.date.available2021-04-06T15:07:10Z
dc.date.issued2021en
dc.identifier.citationBurgers VWG, van der Graaf WTA, van der Meer DJ, McCabe MG, Rijneveld AW, van den Bent MJ, et al. Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The New Lost Tribe. J Natl Compr Canc Netw. 2021;19(3):240-6.en
dc.identifier.pmid33668023en
dc.identifier.doi10.6004/jnccn.2020.7696en
dc.identifier.urihttp://hdl.handle.net/10541/623893
dc.description.abstractHistorically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disease control, AYA care programs should address the unique palliative care needs of this "new" lost tribe within AYA oncology. This report provides a definition and description of the AYA population living with an uncertain and/or poor cancer prognosis in terms of epidemiologic, clinical, and psychosocial characteristics and challenges, and provides perspectives for future research and care initiatives. It also highlights the need to comprehensively examine the experience of AYAs who are living with uncertain and/or poor cancer prognosis to adjust best care practices for this unique groupen
dc.language.isoenen
dc.relation.urlhttps://dx.doi.org/10.6004/jnccn.2020.7696en
dc.titleAdolescents and young adults living with an uncertain or poor cancer prognosis: the 'new' lost tribeen
dc.typeArticleen
dc.contributor.departmentDepartment of Psychosocial Research and Epidemiology, Netherlands Cancer Institute. Department of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdamen
dc.identifier.journalJournal of the National Comprehensive Cancer Networken
dc.description.noteen]
refterms.dateFOA2021-04-07T12:49:09Z


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